Unbearable Suffering: My Struggle Against the Puzzling Suffering of Cluster Headaches
It began on a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.
The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often begin with intense discomfort around one eye that lasts up to several hours.
About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks typically start with sudden, severe pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.
Historical medical texts suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.
It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.
The disorder were only officially classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Prominent specialists in diagnosing the disorder note this.
In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a doctor looked up his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack eased.
National guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some people.
But leading specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with acute therapy alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.
The national guidelines need updating to reflect a
